Ok so after all test so far being normal. Apart from some positive neurological signs in the examination brisk reflexes, hoffmann and romberg, plus loss of vibration senses, position sense and heat sense and pain senses in toes/ hands. I am left with the nerve pain tingly etc where do I go from here, neuro has suggested small fibre neuropathy, but I have looked at that and it doesn’t really fit but never say never, he has also request a blood test checking for cancer that can cause neuro symptoms. GP suggested the neuro may want to do a lumber puncture is this a good idea is it worth it. GP wants me to do less work as she thinks I am doing too much, she has already restricted me to half my hours What questions should I ask at my neuro appointment ? Where do I go from here? I am feeling v worn out with the not knowing what is happening and the pain and lack of sleep is rubbish too
Hi Billie, I would agree to the lumber puncture.Have you had an MRI scan on head and neck? I’m sure the neurologist will request these,if not ask for them.I can certainly empathise with lack of sleep, Fatigue makes all the symptoms that much worst and like you l had to reduce my working hours by half back in September before my diagnosis due to my mind and body screaming at me. Stay in there and listen to your body take regular rests put your feet up, others on the site told me to be kind to myself, now my turn to tell you this!
KEEP A DIARY.you can present this at your appt, it is very helpful for the neurologist.
Take care.let us know how you get on.
Yes had mri of head and cervical spine which his letter describes as unremarkable. I don’t know if he has looked at the MRI or if that’s a radiologist report. I have started a diary of symptoms I feel like I should be relieved that nothing is showing up which I am but the unknown almost feels worse than a diagnosis of something. My GP is great and v supportive but I feel just lost. Getting a bit fed up of trying to explain why I am off work without it sounding like my full medical history lol. I think if I could just get the symptoms manageable I would care what it is I just want to get back to normal, which is why I argued to stay at work at least a bit, to try and hang on to some normality. Not sure I should be still posting here really as I haven’t got a diagnosis, but not sure if there is a forum for unknown neuro illnesses lol